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Brain On Fire – My Month of Madness

Susannah Cahalan was twenty-four-years old when something in the way she perceived things changed. It started with an obsession over bedbugs and descended into hallucinations, seizures and unpredictable acts of bizarre behaviour. Blood tests, scans, numerous procedures, initially all the tests came back negative, her Doctor (a renowned neurologist) insisting it was stress and alcohol consumption. It was neither of those things and if there is one stand-out learning to be gained from this incredible story, it is to ensure always to obtain a second opinion.

This true story provides a fascinating insight into a rare autoimmune disease which causes the body to attack itself and in this case – the brain. It truly is a story that can and has already changed people’s lives; the writer, a reporter on the New York Post observes her own physical and mental decline and then as her mind descends into chaos, she recalls nothing. Her account is pulled together from interviews, hospital video footage and the journal of her family, until her brain begins to regenerate memory.

It is a path that many will have followed who end up spending the rest of their lives in an institution, if they actually survive it. Susannah Cahalan, with the help of a supportive and determined family who won’t give up until they find a treatable diagnosis, is fortunate to be seen by the tenacious and talented Dr Najjar, and one final test later, a simple pen and paper exercise, leads him to the all-important diagnosis and her to the path of eventual recovery.

It was his focus on non-psychiatric causes that prevented her from a much more disastrous outcome. His continuous ground-breaking research posits that some forms of schizophrenia, bipolar disorder, obsessive-compulsive disorder and depression are actually caused by inflammatory conditions in the brain. This research may eventually help to break down barriers between immunology, neurology and psychiatry.

Lower Manhattan from the Staten Island Ferry by Diliff

Before writing this book, the author published an article for the New York Post about her experience, prompting an outpouring from many people who had a family member with an inexplicable brain disease – her case highlights the very real possibility that there are thousands if not more people out there descending into a similar madness.

Her story reminds me of ‘My Stroke of Insight’, the extraordinary story of the brain scientist, Jill Taylor’s experience when at 37 years a blood vessel exploded in her brain and she too observed her mind deteriorate to the point where she could not walk, talk, read, write, or recall any of her life. She recovered and used her incredible insight and knowledge to share that experience with the world – creating an important resource for the sufferers and carers of stroke victims. She gives an excellent TED talk on the subject here. Interestingly, she became a brain scientist herself due to her brother’s diagnosis of a brain disorder, schizophrenia.

A gripping, unputdownable memoir that shows how little we really know about the workings of the brain and how difficult it is to diagnose. It’s thanks to books like this that more diagnoses can and are being made helping sufferers to find the right path to recovery.

16 thoughts on “Brain On Fire – My Month of Madness”

It’s certainly rare that someone can experience what these two women did and then share it in this way with the world, enlightening us all and providing very real help to those who must care for someone affected by such a traumatic event.

The brain is fascinating and it’s hard to believe doctors and scientists still don’t know enough about it yet. This story sounds amazing! I saw that video of Jill Taylor on TED Talks about two or three years ago and was marvelled over it. We were discussing problems with the brain, cancer, etc. on a Chi Gong weekend and a friend urged us to watch the video when we got home. Mind blowing to say the least. I also had a friend who had brain cancer and couldn’t be operated on but underwent chemo and he was saved. He was an engineer and the first thing to go for him was his spacial knowledge. He couldn’t find the toilet in his own home anymore, and surely not use a map to drive to a specific location. Even using the computer was a problem. Now that he’s been cured things are back but not like before. Thanks for this captivating post!

It is fascinating what we do know and I think it will continue to be as more and more is revealed. It is amazing how the brain cells regenerate and thank goodness they do, for something to have been destroyed within and then for the brain to start patching it up and replacing it and witnessing how the person comes back to who they were – simply incredible.

Strangely, I this book wasn’t really on my radar until last night, when another book-loving friend told me all about it. I am terrified to read this, perhaps because my mom had an unusual brain condition (chiari malformation) that went misdiagnosed for many, many years. It’s all so random — not sure if I can go here.

The book is dedicated to all those without a diagnosis, something which is the cause of so much anxiety, I can imagine how terrifying it must have been for your mom and those around her.

I think these books inform us in ways the medical profession doesn’t, it brings these complex subjects down to our level and introduces us to connections between behaviours and problems and provides some basic terminology that lodges in our own memories, knowledge that may one day be useful.

The book itself isn’t frightening, it’s the knowledge that so many people do go undiagnosed, she cites at least one example where a family presented her article to a member of the medical profession which changed the course of their daughters treatment. By becoming a little more informed ourselves, hopefully that will change. The number of people now being diagnosed since her case is incredible.

I love your review Claire. This is one of the very best books I’ve read in a while and I’m glad someone else is spreading the word about it too. If you contact Karen Browning you may still be able to come to the sold out event at Foyles on the 6th, where Susannah will be speaking: http://www.foyles.co.uk/Public/Events/Detail.aspx?eventId=1733

Both women have harrowing story of strength and determination to tell. The TED talk, amazing, made me stop to count my blessings. Both have been on extraordinary journeys and have painful shared, but also, given so much hope to others. I would not have known about either, thanks Claire, for sharing. I agree with Cambriasconer as well, you have a way with writing that holds the reader to the final period.

Wonderful review, Claire. In my country a lot of these disorders are attributed to superstition, for want of better understanding by the people. Such a book will go a long way to helping raise awareness and to educate and sensitize the people.

That’s so true Celestine, it is very sad as the cost to find out has been so expensive in the past, the one hope is that by establishing this disease, perhaps in future it will become quicker to diagnose and that people will realise it is something that can be cured. So very sad to think of those who become lost to this kind of thing.

The terrifying thing after the event is how close she came to not getting the diagnosis. They caught it at the catatonic stage that “precedes breathing failure, coma and sometimes death”. She was lucky. The brain biopsy enabled the right treatment to be found and gradually she started to recover. But without it, who knows? “It’s hard to say. There’s never been a natural history of the disease because it was only discovered in 2007, but I think it’s safe to say that I would probably have ended up in a psychiatric ward. They were leaning toward that anyway. Or, a nursing home. Or, I could have died.

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“Adoption is outside. You act out what it feels like to be the one who doesn't belong. And you act it out by trying to do to others what has been done to you. It is impossible to believe anyone loves you for yourself.

I never believed that my parents loved me. I tried to love them but it didn't work. It has taken me a long time to learn how to love - both the giving and the receiving. I have written about love obsessively, forensically, and I know/knew it as the highest value.

I loved God of course, in the early days, and God loved me.That was something. And I loved animals and nature. And poetry. People were the problem. How do you love another person? How do you trust another person to love you?

I had no idea.
I thought that love was loss.
Why is the measure of love loss?."